My PKU Upbringing

Soon after I was born, my initial heel-prick blood test, diagnosed me with PKU – a metabolic disorder unfamiliar to my mum and dad.

I’ve been told time and time again about the initial panic they felt, questioning if I would have a normal life, if I would develop normally and whether I would grow to have neurological impairments. After having met with doctors and dietitians who broke down the severity (or lack thereof) of my condition, some more rational thinking occurred, and this shone throughout my childhood.

Growing up, my parents always ensured I didn’t feel different. A strive for normalcy led me to focus less on my limitations and more towards other aspects of life, like schooling and especially sport. As a child going to all my friends’ birthday parties, I often felt disappointed with missing out on pizza or party pies, and only having a sliver of cake as a treat. But my friends and their families didn’t really bat an eyelid and have always been understanding and curious, to the point where I pretty much had a word for word speech about PKU, what it is and how it affects my life down pat.

When it came to managing my diet, my mum taught me pretty much as soon as I learned my times tables, how to count units of protein on the nutritional panel of foods. Multiplying the grams by three to give units and aiming to be under 19 per day (roughly 7 grams). This allowed me to balance out what was worth eating with regards to the protein per portion size, what were my staple energy foods and what were my treats.

After practicing this for a few years, a routine began to develop whereby I could walk through the shops and know what I could and couldn’t have, leading to a pretty standard diet from day to day. Although my dinner diet consisted purely of different forms of deep-fried potato until I was 17, I was often reminded “what are you going to eat when you go out for dinner on a date?” This really motivated me to develop my palate beyond my school-day limitations, looking, alongside my dietitian and parents, for alternative meals and recipes that would sustain me.

This allowed me to tackle Europe as an 18-year-old on my gap year, living in Scotland, ordering different meals in different countries like patatas frittas in Spain and beautiful fresh vegetables in Italy, followed by some sorbet of course!

My parents really set me up for success growing up, assisting me when I needed it but also helping me to learn to be independent in my food choices. Although I’m still living at home and being treated with beautiful Massaman curries with Loprofin Rice, vegetable stir fries with vermicelli and of course the old faithful Hash browns for lunch, I’ve been prepped with all the skills and knowledge to be confident and independent in the world.

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